Posts Tagged ‘health insurance’

White House sends form letter back about urgent health insurance issue

November 17, 2010

I wrote and called the White House several times with an urgent specific issue about health insurance and got a form letter back. I lost my health insurance with the only company that covers people in Maryland with pre-existing conditions, and I will need dialysis or a kidney transplant soon.  The numbers and websites below are no good for me because I’m not eligible for any of those programs. Medicaid has a $12,000 deductible in the first six months which is totally ridiculous.

By the way, a lot of people, including those at Health and Human Services (both national and local) are under the mistaken impression that the new health care law prohibits insurance companies from discriminating against people on the basis of pre-existing conditions, but that’s not true.  The provision is only good if you are under 19 or if it is after 2014. In fact, the way the underwriting codes are written, it is literally impossible for someone born with a pre-existing condition to get health insurance except through a federal pool but you have to have not had insurance for six months.  Some states like Maryland have their own plans, making people ineligible for the federal plan, and the Maryland Health Insurance Plan was the one that terminated me because I missed a payment.  They rejected my appeal. The second appeal is in progress but they say they are too busy to get to it now.

Yesterday I spent the whole day at the local HHS and at the end of the day they finally told me there would be a $12,000 deductible for Medicaid.  I wish they had told me that last week when I was there.

Imagine if you forgot to pay your phone bill once, they didn’t give you a warning or even notify you of the termination, and then your phone service was cut off with no chance of getting any other phone service (unless you paid $12,000 first).  Well, health insurance is a much more important issue.  Without it, my donor can’t get tested, I can’t get my kidney function tested, I can’t get a procedure done to get back on the waiting list, I can’t get surgery to prepare for dialysis, I can’t get medications, not to mention that there’s always the possibility of getting in an accident or getting sick.

Here’s the White House’s form letter back:

From: no-reply@correspondence.whitehouse.gov
Subject: Thank you for your message.
Date: Tue, 16 Nov 2010 18:45:04 -0500

Dear Friend:

Thank you for writing.  I have been moved and inspired by the stories of Americans struggling with health care, and I appreciate your perspective.  It is because of the many men and women facing frustration, hardship, and financial burden in addition to significant health problems that we worked so hard to get health reform done.

After a century of striving, after a year of debate, and after a historic vote, health care reform is no longer an unmet promise to the American people.  It is the law of the land.  While some reforms will be put in place later, a host of desperately needed reforms have already gone into effect.  To learn more about what health reform means for you, visit www.HealthCare.gov orwww.WhiteHouse.gov/HealthReform.

As we work together to improve the lives of all our citizens, please know the trials and triumphs of Americans like you motivate my Administration to work even harder to overcome the challenges before us.  I am confident we will emerge from these tough times stronger than before with a renewed promise of a better future for all.

For more information on resources that may be available to you, please visit http://go.usa.gov/aIv or http://go.usa.gov/aI7 or call 1-(800)-FED-INFO.  Those seeking assistance with health care can also call the Department of Health and Human Services at 1-(877)-696-6775.

Again, thank you for contacting me.  I wish you all the best.

Sincerely,

Barack Obama

 

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More health insurance problems

November 11, 2010

I’m getting a little tired of writing about the fact that the only health insurance carrier in Maryland that offers insurance to people with pre-existing conditions dropped me Oct. 31. (You can scroll down to see the other entries). But here goes with some more.

Just to recap, I was born with kidney disease and pretty soon I’ll need dialysis or a transplant.  But I can’t do any of the work that needs to be done prior to that without insurance, I can’t continue on the waiting list, and most importantly, any donors that want to get tested can’t.  Even if I had someone now and my insurance was active, there might not be enough time to stave off dialysis but without insurance it makes it much less likely that I’ll get the transplant before having to dialyse (see www.mikeneedsakidney.com).  Then there’s just the notion that it’s good to have health insurance for non-kidney related reasons.

So yesterday, I found out that my appeal to get the insurance back was rejected.  Good news, though –  I could send in another appeal. The person from CareFirst (a.k.a. CareLast) said he emailed me the notification that I was rejected.  I didn’t get it so I spelled out my email address.  I still didn’t get it so I told him to email it to my other address.  I still didn’t get it so I emailed him and he said he’d email me the notification.

I asked about the instructions and he told me that he already emailed them to me yesterday.

I finally got them and sent in the second appeal and he said he’d get to it when he got a chance.

I called one of the kidney transplant staff who said that without insurance she expects me to not survive the next year.  That’s not exactly correct because as soon as I go on dialysis I’m eligible for Medicare.  So one strategy would be to go on dialysis immediately, but the problems with that are: 1) how do I pay for the fistula surgery that is necessary to start dialysis? 2) Do I really want to start dialysis before it’s necessary? and 3) kidney transplants done on people who are already on dialysis are on average less successful than those done on people who haven’t had to go on dialysis.

Anyway, I called a bunch of places, mostly with poor results, and the congressman’s office says to wait a while, but I don’t think that’s right.

After writing all of this I realized it seemed a bit melodramatic.  Another person said it sounds like I’m panicking and that I should relax a little. But I think this is important, and there must be a lot of other people in similar situations who aren’t as articulate on paper or in writing, and who are not as persistent.  If anyone has a better approach to tackling the problem, I’m listening.

This might be the last blog on this for a while.  I went to see Yi vs.Yao last night so I’m going to write about that next.

The good news is the transplant really doesn’t seem like a big deal at all when compared with this insurance problem.

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Day two of health insurance debacle

November 9, 2010

Just to sum up the situation, the Maryland Health Insurance Plan, the only plan in the state of Maryland that covers people who were born with pre-existing conditions, terminated my insurance because I forgot to pay a month.  They never gave me a warning, and never even notified me that I was dropped.  Now I have literally no health coverage, with my only option being Medicaid, but that can take up to two months to get, and it sounds like you can only make under a certain amount of money to be eligible, and it doesn’t cover as much as MHIP.

In the meantime, I need to get medication, have labwork done, have a procedure before getting reactivated on the kidney transplant waiting list, prepare for dialysis by getting surgery for a fistula if I don’t find a donor soon, and have a potential donor get tested, who can’t get tested without surgery.  Plus, it’s good to have insurance just in case something happens.

Why am I writing all of this?  1) To document the process, which might help me get insurance as soon as possible, 2) in the hope that someone might read this and have a suggestion, 3) to show people that it’s a myth that everyone can get health coverage.  In fact, it’s impossible for me to get it right now and I’m offering $150 to anyone who can get it for me, 4) It may sound corny, but I really believe in fighting for what is right and just, and 4) There are probably people out there who can’t advocate for themselves and won’t be as persistent as I am, so if I can’t get insurance as I pester congressmen, state delegates, and the White House, how can they?

Most of the responses I’ve gotten over the last couple of days have gone something like this:

  • “Oh, you’re in luck.  There is one plan that’s like a safety net in Maryland that will cover people with pre-existing conditions.  It’s called the Maryland Health Insurance Plan.”  Then I say that’s the plan that dropped me.  Then they say that’s bordering on criminal for the plan that is supposed to cover people to end the insurance and then refuse to reinstate it.
  • “Medicaid is your only option.”  But I need something now and I can’t get that now
  • “You’re really screwed.”
  • “We have rules and regulations.  It has to go through a process.  It takes 60 days…”  These people don’t really care that the situation is urgent.  It’s almost as if they take a perverse pleasure in explaining that they have to follow regulations.

So today, here are some of the things I did:

  • Called medhealthinsurance.com.  They rejected me and said they couldn’t offer me anything “today.”  I asked if they could offer anything any other day.  They hung up on me.
  • Called Health Plan One.  It took two hours on hold, but they let me know that they couldn’t cover me.
  • Called the Agency for Health Care Research and Quality.  They told me that Obamacare, the new law prohibits insurance companies from discriminating on the basis of pre-existing conditions.  I informed them they were wrong, that that only goes into effect on January 1, 2014 (it’s in effect now for children).
  • Called the National Kidney Foundation who said to call the local HHS office.
  • Made a complaint with the Maryland Insurance Administration who informed me that it would take a while.
  • Listed a comment on the HHS website requesting information about how to get health insurance.
  • Called the HHS “Office of Consumer Information and Insurance/Pre-existing Condition Insurance Plan,” who told me to try MHIP or Medicaid.
  • Contacted Congressman Van Hollen’s office, who said they would work really hard on it, but I knew I was at their mercy because there’s no other person who can represent me.
  • Heard back from someone who responded to my craiglist ad offering $150 for information that will lead to my getting health insurance ASAP. She hatches a plan that isn’t ideal but just might work.  Or not.  I agree to pay $50 now and the rest later if it works.
  • Emailed Seven on Your Side.
  • Contacted the social worker at one of the hospitals I’m working with.  She’s on vacation and has no backup.
  • Contacted the financial coordinator and left a message.
  • Contacted the financial coordinator at another hospital who had “no idea” what I could do.
  • Contacted the National Institute of Diabetes and Digestive and Kidney Diseases.  Surprisingly, they respond with links to many resources about kidney disease.  However, one of the links says, “People who do not have private insurance can work with a social worker, nurse, or doctor to locate and apply for other sources of financial aid,” which is laughable.
  • Contacted the Polycystic Kidney Disease (PKD) Foundation who suggested getting Medicaid.
  • Contacted the White House who told me to “flag hardship” in my email so it will be noticed.
  • Along the way, I also got suggestions to try Medicare, which does cover people who are on dialysis and have had transplant, but doesn’t cover those who are just a few months away from those.

One strategy is just to make sure my kidney function doesn’t go down.  One way of doing that?

Less stress.

 

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Health insurance lapsed

November 8, 2010

“Monday’s Funday, Charlie Brown?”  ”Nightmare on My Street?”  It doesn’t really matter what I call this blog entry.

Last night I went to pick up a prescription for the drug that reduces phosphorous in the blood.  I found out that my health insurance had been terminated because of non-payment.  I never received any extra notices saying it was late, no warnings, and I wouldn’t have even known that my health insurance was cancelled if I hadn’t gone to the pharmacy.

I can almost hear the critics, the righteous ones, now saying, “You should have paid, and you should have known that might happen.  It says it right there in the agreement…” There is no way to automatically pay each month.  I happened to forget.  If you forget to pay your phone or cable bill, you get a call reminding you.  Not so for health insurance.

I very urgently need the insurance for meds, services such as labwork, and for my a potential donor to get tested – I will soon need a transplant or dialysis (www.mikeneedsakidney.com).

CareFirst BCBS/Maryland Health Insurance Plan says I will have to appeal and won’t find out for 60 days. I swear, I could have told them, “I’m going to die at 5 p.m. today, but you can save my life by allowing me to pay the monthly premium and I’ll live,” and they would have probably replied, “I understand, but we can’t do anything.  It’s policy.”  So I FedExed the letter and it cost $25.

I had to cancel an appointment today at Georgetown Hospital for a kidney transplant evaluation and it takes two and a half months to get an appointment.

I called 311 -that’s when you have something that supposedly isn’t an emergency, and predictably, they treat it like it’s not that important.

I was told to go to the Montgomery County Department of Health and Human Services office and apply for insurance but it takes two months to get it.

So I spent all day at the local HHS and found out that they only offer medical assistance, not health insurance, and that even that takes two months.  But not before going to the wrong building.  They told me to go to a certain address, and after two hours of waiting I was told it was only for kids and pregnant women.  But there were a bunch of men there too and I asked the guy where the sign was indicating that it was for just pregnant women and kids and he said he didn’t know.  So he directed me to the right place.

Then I applied for BCBS through einsurance.com and got rejected because of kidney disease.  Their earliest start date was 12/1 anyway.

Then I called the US Uninsured Helpline/”Coverage For All” (or at least some) at 800-234-1317 and they directed me to the Maryland Health Insurance Plan (the ones that dropped me and won’t reinstate me for at least two months).  They said the only other option is the new federal health care program, but you aren’t eligible for that if you’ve had health insurance the last six months.

One other thing about MHIP is that when you ask to speak to a supervisor, they always say that one will get back to you within 24-48 hours, but it’s a lie — it never happens.

Then I called Medicare.  They said I’m only eligible for Medicare if I’m on dialysis or have a transplant.  Then I called Social Security.  Same thing.

They referred me to healthcare.gov but it turns out that they only mention Medicare, plans like MHIP, and Medicaid, which I found out from Social Security is the same as “medical assistance” and is health insurance, which would work, but I can’t wait that long.

I called and emailed Congressman Van Hollen, who is great at stumping on MSNBC for the Democrats, but so-so at best when responding to important requests from constituents, from what I’ve experienced.

I have a procedure scheduled next week, will need an access for dialysis put in in the next month, and if the hospital finds that my insurance has lapsed, they won’t run the tests on the donor, which would make the need for the dialysis access surgery even greater.

Then I called the “Coverage for All/We’re just kidding about our title” line again and they gave me a bunch of numbers for insurance brokers.  The only problem is that they were financial companies.

The bottom line is, how can I get health insurance effective immediately so that 1) any potential donor can get tested, 2) I can get the tests I need to get back on the waiting list, and 3) I can get the surgery for the access for dialysis, plus many other reasons?  It seems like there’s literally no way for me to get health insurance now.  If anyone knows of a way, if you are the first person to send me information leading to me getting health insurance right away, I will pay you a $100 reward.  Seriously.  Email me at mikefrandsen@hotmail.com.  And also remember that when people scoff at the notion that people can’t get health insurance, and claim that that problem really doesn’t exist, here’s proof.

Reward just went up to $150.

Also see:  Health Insurance Fiasco Part 1 and Part 2.

Update:  I also called the Maryland Insurance Information to make a complaint and they told me to fax it in and they would investigate it within two months.

I also called MHIP and they said no, you’re not eligible to get reinstated within two months, it will take 12 months.

I also called the White House but got put on hold.

Then I called the National Institute of Diabetes and Digestive and Kidney Diseases and left a message.

I called the Maryland Kidney Disease program but they are only a supplement for people who already have insurance.

Then I called “The Best Affordable Maryland Health Insurance Choices and Ethical Advice from the National Association of Socially Responsible Organizations (NASRO) for Non Profits, Businesses and Individuals/National Association for Socially Responsible Organizations” but the mailbox was full.

I also emailed Francis Collins, the head of the National Institutes of Health, and asked if he would put me in touch with someone at HHS but there was no reply.

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Health Insurance Fiasco

December 23, 2009

I’ve had some interesting conversations with my insurance company – Blue Cross Blue Shield’s CareFirst (or should I say CareLast) Maryland Health Insurance Plan.

Here are just a few of the issues:

7-15-08:  I fill out forms to apply for health insurance as my COBRA policy is running out.

8-1-08:  BCBS says I can’t get insurance until they document that they received a proof of residency, but they won’t say whether they received it or not.

8-5-08:  I say I’m worried about an insurance lapse but they say they won’t check whether they received fax and won’t tell me if or how much I owe or who to send the money to.

8-8-08:  They say they’ve received everything and will send me a payment letter.

8-9-08:  I receive a letter saying they need verification of address and certificate of insurance, though I faxed them two weeks earlier.

8-20-08:  I call them and they say they’ve received everything and I should have gotten a payment letter.  The representative says she will call me back today.  I make her promise to call me back but she doesn’t.  I call someone else but get put on hold for a half hour and disconnected.  Then I call again and they say I need proof of residency.  For the fifth time in three weeks, I ask to speak to a supervisor.

8-21-08:  They say I still need proof of residency.  Then I speak to someone else and she says everything is in.  My hospital Financial Coordinator calls them and says the ID number they’ve given me doesn’t exist.  The Financial Coordinator says she has been on the phone with them a long time.

8-22-08:   The social worker at the hospital suggests I go off the transplant waiting list until I get good insurance.

9-3-08:  I call MHIP/BCBS and ask why I should have to pay for August when I didn’t have insurance until the end of August.  They say write an appeal, which could take 30-45 days for the results.

9-4-08:  I ask to speak to a supervisor but am disconnected after 20 minutes.

9-08 to 10/08:  I send in a medical claim.  MHIP/BCBS says they need medical documentation.  I call doctor’s office who says they’ll send it.  I call MHIP/BCBS who says they didn’t get it.  Told doctor’s office to send it.  They said they would.  MHIP/BCBS says they didn’t get it.  Called and emailed doctor’s office saying mail it to the address as well as to me and call MHIP/BCBS.  MHIP/BCBS refused to tell me the fax number and refused to tell me what information was needed (I guess they don’t like dealing with patients).  The MHIP/BCBS automated system keeps hanging up on me.  Two people tell me they had no fax machine and didn’t receive any information.  The next day two different people told me they received a fax on the 14th.

I finally did get reimbursed.

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Fun with Health Insurance

March 28, 2009

I thought it would be interesting to cut and paste some posts from a kidney disease forum.  Entries having to do with health insurance are listed in random order.  Some of the formatting is a bit off because of the nature of the board.

Enjoy.  

***

My son is a mutation so there was no early warning. Point in fact is just this year his employeer decided to drop the insurance for drug coverage.  Privately I think my son was the biggest reason that it was dropped. Im sure to be an employer paying insurance premiums for him is skyhigh. So now after 5 years of a successful transplant, he will have no insurance for his drugs. He falls between the cracks. Hes not dirtpoor, yet his income is above poverty level.

***

I dont think you realize that you are in a very fortunate position. I know people who dont even know how they are going to buy groceries this month let alone come up with the kind of money we are both talking a bout. Many many people dont even have transplants done because they dont know how they would pay for the drugs after Medicare leaves off. Several people on this forum and another one that I am on were refused transplant because of their inability to prove that they could pay for their drugs after the operation. Many people dont have jobs with good benefits or friends with a lot of money.

***

She needs to contact the different companies.  And yes, some transplant centers won’t do a transplant if you can’t prove that you will be able to afford the meds after the Medicare runs out in 3 yrs.

***

These medications are so expensive that we fall into the “donut hole” very soon.  Then we have to pay our own way through the donut hole, at least thousands of dollars before catastropic coverage kicks in.

***

I’m trying to make what pills I have left last–and this makes me

angry], I think I will go to my nephrologist and ask him if he will

just agree to prescribe pain meds for, say, six months until I can get

some other issues out of the way. The only other thing I know to do is

to go “doctor shopping” [oh no! they say that's a crime on the

news-grrr] [which I cannot afford] and just tell them straight up, “Yep,

I’m drug seeking. I’m in pain, it’s real, will you help me or not?”

[Which probably won't be very effective.]

***

Sorry so long but I really wanted to explain the whole thought process.

I know I sound like a druggie or something but, the fact is, I know

something about “druggies” and that is not my problem. I just want to

be able to function for as long as my kidney function will allow me to.

***

If there is any way possible he should try to keep his coverage. As he has a pre existing condition and it will be next to impossible to get coverage and the programs that are set up to help have very Little funds and the process of just getting signed up can be months. I wish I had better things to tell you. But this is why my brother could not get his transplant because he had no way of paying for his rejection medications after medicare stopped paying . This is a area that we need to really try and get new laws passed.

***

i was a nurse for years so i understand the medical side of it, but it was too expensive to keep up with the labs and dr. visits.

***

If she is on Medicare then when she receives a transplant the meds will automatically be covered through Medicare for three (3) years not 18 months.  Then she will need to find another way to pay for her antirejection drugs which can be quite costly…some say between $2,000 and $4,000 per month.  If she is not on Medicare and has no way to pay for the medications then the transplant center may not approve her for listing as a transplant will likely not be able to survive without the necessary meds.  Each center has their own protocol regarding requirements for insurance, weight, medical issues etc.  so tell her to “shop around” for a center that will be willing to take a chance on her.

***

I got my Medicare ahead of my PKD diagnosis, so since it is not transplant-related I get to keep it as long as my ‘underlying condition’ exists.  Irony is, of course, that it’s likely that PKD is the cause of the heart valve stuff that has given me a lot of trouble and got me covered.  The transplant question -kicking folks off based on an arbitrary time limit- makes no sense.

***

I’m 3 and 1/2 years post Kidney transplant and my
  Medicare coverage stopped at the end of the month in
  which I passed the 3 year mark. It was amazing how
  hard I tried to find out in advance if this would
  happen –I thought the transplant social workers
  would know about this but they told me I wouldn’t be
  dropped –and yes I was dropped. I have no other
  reason to be on Medicare at this time so now my
  transplant drugs are being covered by my regular
  insurance. I also was dropped from the other
  Medicaare covrerage and will have wait until I’m 65
  to have it again (or of course I could go back on
  dialysis or become disabled in some other covered
  way) My expenses have really gone up since Medicare
  dropped their coverage.

***

I heard something else in the CSpan interview of Dr.  Satel and her  donor. Is it true, as they said, that Medicare stops paying out the benefits for transplant drugs after the 3rd year??
  Now that sounds positively cruel and counter-intuitive. From what was said, Medicare will pay for the transplant expenses, but only
allows 3 years for the anti-rejection drugs. They will pay for a return to
dialysis. 
 Anyone familiar w the ins and outs of Medicare on
kidney transplant?

***

So then I can assume when they said I don’t have prescription coverage, that means I don’t.  This is what I had when I was working, and since my creatinine had spiked, I was afraid to try to buy another kind and find out down the road that they don’t cover pre-existing conditions.  I am scared about the meds after Medicare runs out.

***

I am going to a free clinic because when I left my job I couldn’t

afford the insurance. now, since my doc is sure I need the fistula, I

am beginning to worry if the clinic will pay for that surgery and/or

dialysis. I think when they schedule dialysis, they help you get on

medicare, don’t they?

***

I guess I need to talk to the director at the clinic about all of

this. I sure don’t want the dialysis, but, I guess I will have too if

I want to survive!!!!

 

Anyone with any info, I would greatly appreciate it. I guess I’m

a “dummy” when it comes to knowing about all of this!!

***

Now I wish I waited because I will soon lose my Medicare health coverage and will

have to apply for group health insurance. My question: I’m currently

a medical assistant student and I will be moving to another state and

looking for a job in a few months. Does anyone know if an insurance

co. be able to access my PKD ultrasound and diagnosis? (I’m

considering lying) I haven’t had any treatment since the diagnosis.

***

It’s a tough choice to have a teen age daughter tested by ultrasound

(OR NOT) for PKD. There’s decisions to make about family planning,

blood pressure monitoring, and UTI prevention. However, you don’t want

your child labeled as a “pre-existing condition” on insurance, etc.

***

Meanwhile, I’ve been hospitalized twice times this year with kidney

infections. The problem is that I don’t have insurance, can’t get

insurance, don’t qualify for anything tht I can think of and never

have enough money to go to the doctor.

 

Anyway, my point in case I haven’t made it, is that I NEED medical

care. Not just for the surgery but I need to be able to see a doctor

before it becomes a life threatening situation. My nephrologist would

LOVE for me to be able to have regular creatinine tests, 24-hour,

etc. but I just can’t swing it.

 

SOOOOO, does ANYBODY know ANYTHING about applying for straight up

Medicaid in the state of Georgia? I have been online all evening and

I can’t figure it out. [And, I'm not stupid. How is it that so many

people manage to get this stuff?]My family is stretched to the limits

of their ability to help but they keep saying, “There is no way, in

this country, you would be left to die in the streets without being

able to get help.” Oh yea!! Somebody show me. Please. [she adds

meekly]

 

I’m going to try again tomorrow but for now I thought I’d check with

some “experts”. Sure hope someone has some ideas.

***

You can’t get on MEDICARE until you qualify for SSI or SSD, but MEDICAID is different.  Medicaid is the state run health care for low income people.  You can probably qualify based on the bills you have from hospital visits.  I am surprised that the hospital never offered to help you with that. 

***

What a fool I was.  I first received Medicare due to dialysis back in 1982.  I refused my work’s insurance… thinking Medicare would take care of everything.  Well, of course, who knew there was a 20% co=pay.  But, in NY, was able to get a Medigap insurance, which was still cheaper than what the insurance at work would have cost me….still dumb, cause once I left on disability, I could of still had the work’s insurance… ..especially, once I moved down here to FL.  Seems Fl, doesn’t recognize anyone under the age of 65 for a Medigap insurance policy…so I am stuck paying all my 20% and deductible for every time I go into the hospital.

***

If they just throw him out on the street I don’t

know what our family will do for health/life insurance. As most of

you know this disease makes him and our children uninsurable.

***

I hate to bear more bad news, but my father is fighting the Medicare battle. He basically has been told he will not get a kidney since he can not show proof of being able to pay for the anti-rejection mediciation after the transplant. He has private insurance, but he was told by Blue Cross that it does not cover prescriptions. He has only Medicare to rely on and they are not willing to pick up the cost for the anti-rejection meds. They will pay the difference for the transplant, but not the meds.

***

I did not have the money, strength, time, or energy to play

medication roulette again.

***

No, medicare part B does not pay for the drugs, unless you take Part D with the

additional premiums.   You can, however, get assistance, for the Part D premiums 

if you are income eligible.

***

I just had my transplant in July and I was under the same impression, until I read

the “fine print” and have talked, in depth, with my social worker, and others who

have had transplants before me.

***

Does this sound right?

The hospital financial coordinator told me that you can’t apply for Medicare until the day of the transplant surgery. The surgery costs 
about $130,000, of which $26,000 is not covered by Medicare? 

The prescriptions cost $4,000 a month of which $1,000 per month (25%) 
is not covered by Medicare?

***

Had breakfast with a Canadian friend whose American wife was turning 65 and thus becoming eligible for Medicare. So he asked me about the Medicare program. I began to explain Part A and Part B and Part D (he wanted to know what happened to part C? Is there /was there a part C?? Couldn’t answer that). Talked about Medicare supplemental (versions A through K) and Medicare advantage programs and redoing part D each year.

 

I wished I could have taken a picture of the shocked and speechless expression he had!

***

Yes, it can be very complicated and there are many people confused about it all. (I’m often confused about it!)Unfortunately some of those people are those providing guidance..pharmacies, social workers, elder counselors, and sometimes even the Social Security workers filling out the forms. It’s important you understand what you’re entitled to, to the point you can push back when someone tells you different.

***

Hi All, My son had a transplant five years ago and has been doing

very well. He has a good job with good insurance. Tonight he dropped

the bomb at his sister and I that he was losing his drug insurance.

His coverage remains the same, minus his drug ins. Im convinced that

he is one of the reasons for the loss since his drugs are so

expensive. I don’t mean to sound mercenary but to all of you out there

who are contemplating a transplant please be aware that its expensive

and after the transplant the drugs for the rest of your life are very

expensive also. Now what do we do? I’m very scared and more then a

little angry. So this has turned into venting along with asking for

advice. He contemplated updating his resume’ but it really wouldn’t

help since the drugs are so expensive and he couldn’t make enough more

to make up the difference plus he loves his job. I’m going to make

some phone calls tomorrow am but does anyone else have any good ideas.

Right now I’m too agitated to think clearly. Thanks,A PKD Mother

***

After reading everyone’s posts, I just wanted to point out … 

THIS is why so many American citizens get lost in our bureaucratic health system.   I am a (relatively) healthy thirtysomething who works in the IT field and is pretty savvy when it comes to small print … and this STILL sounds like a spaghetti bowl of red tape.  

Medicare or Medicaid … Part A, Part B, Part D … primary or secondary … but only if you meet work qualifications … for a limited time … unless you qualify for disability … and you apply on a Tuesday when the moon is full and you stand on one foot singing, “Rocket Man” … come on!

If it’s confusing for us … can you IMAGINE what it’s like for our parents and grandparents?  By the time I need dialysis … which I hope is 20 years from now … I’m going to have to give a DNA sample just to apply.   This is ridiculous!

***

I don’t mean to sound unsympathetic as I say

this, so laugh with me, please… you’ve only

been turned down once on each applicaiton? LOL!

Man – you’re just getting started. Many, many

people get turned down two or three times before

they get in the program. Seems both very

inefficient and CRUEL, but the system isn’t as

efficient as it should be. The worker-bees buzz

around, and very often it’s a game of endurance.

Hate to say it, but it’s true.

***

From some of the things I hear other Americans say regarding their

medical coverage and problems I just say thank God I live here. I was

told by some people that most of your insurance companies will cut off

your transplant drug coverage after a few years.

***

Welcome to the group. I wanted to suggest that your son should not be tested until there is a need to do so i.e. symptoms. If he is diagnosed with PKD it will follow him the rest of his life, causing significant impact on his ability to get life insurance and health insurance. There have probably been some past discussions on this (though I get confused what’s been said where, since I am on another list also). I had no trouble getting life insurance until I was diagnosed with PKD. Since then, I have been turned down so many times, I have given up.

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